my world……

October 7, 2016

E p i l e p s y

This is a very personal blog but one I have wanted to write for a while. The day after my son’s 6th birthday this year, essentially my life changed, I was sat in a neurologists room with my mum, both with tears running down our face. We had just been told I had epilepsy.

I had been suffering from what I could only describe as occasionally ‘a foggy head’ when talking to people and general going about my daily life . I would suddenly lose the ability to speak or react, or not respond to people and appear disinterested or stare off into the distance. Little did I know these were absence seizures and I was having them daily. I have also walked out in front of cars and been reduced to tears where I can’t speak or remember something or even lose concept of where I am and what I’m doing. When you first get the diagnosis it means quite a few hospital appointments and scans and tests, which can be daunting and it also means you get very familiar with public transport and it can be frustrating at what could be a quick 15 minute drive and a half an hour appointment turns into nearly an hours travel there and then back and that’s saying the transport is on time, or even running. We all know how frustrating that is!

I am no longer able to drive until I find suitable medication and go a year seizure free, so not until at least 2018. It also means any more children are out of the question as the medication I need causes severe birth defects, if not death before term. This has led to me lose someone who I cared about at the time as he wanted a child and I was unable to safely do that, it eventually led to that relationship breakdown, more difficulty to what was already a difficult time for myself and my family who now ring daily as they worry.

Admittedly as silly as it sounds, after the appointment, I was slightly relieved that what I was going through had a name and a reason. I was scared I would be turned away and told to deal with it, and that was what had delayed me seeing anyone about it. Until one evening I was driving and had a seizure at the wheel, I lost concept of where I was and where was going. That was the trigger for me to see someone as the thought of me crashing into someone or having an accident with olli, frankly scared the hell out of me.

But this post isn’t for sympathy it’s for empathy and to raise understanding. As along this journey I have discovered that epilepsy is a word everyone knows, but few know about and even I didn’t understand it. There are so many types of epelipsy and it’s affects each individual differently. I have a condition no one knows about or can see until I have seizure and have to explain myself. I will never introduce myself as someone with epilepsy as it doesn’t define me, or change me and nor should it alter people’s opinion of me. I’m very grateful I do not have physical seizures so luckily I am rarely a danger to myself or my son. I know people who do suffer with those and it’s very worrying for their family and friends daily, fearing the worst whenever the phone rings.

I was told to consider leaving my job until suitable medication was found, but why should I? I coped before the diagnosis and what I was experiencing had a name and will continue doing so. Like I said this will not define me or control me. I still had to be a mum to my son and couldn’t ‘leave’ that role so why should anything else change. I am very lucky to have a great family around me and some supportive friends and colleagues, and recently I have been lucky enough to have another supportive person come into my life, who too, like my friends and family and work friends is very understanding and doesn’t treat me differently and is very understanding when I have my ‘moments’ and/or get upset and angry about it all.

To look at me you wouldn’t know I had this disability so why should it change when you find out I do have it? And please don’t ask me if I ‘will have a seizure on you’ it’s not funny as I may well do and can be very embarrassing losing the ability to talk, think or read.